Face aux dilemmes éthiques, quelle démarche ? À propos d’une alimentation entérale chez un enfant polyhandicapé

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The clinical condition of a young 15-year old patient with multiple disabilities, gradually deteriorated: atrophy, vicious attitudes, weight loss… The meals, which lasted a very long time, were “an ongoing battle” exhausting for the young patient, staff and parents. We, caregivers, considered the interest of a gastrostomy. What to do or not, what decision to make? What level of support is considered not to be in an unreasonable obstinacy? When a child cannot speak for himself or herself, who owns the decision: parents, caregivers? Ethics entails the permanent adaptation of moral values to the needs of society, allowing it to keep its humanity, especially towards the weakest and sickest. It is convened in our questioning; it is not simple: what is the “right action”, the “good care”, whose “own good” do we want? Our care should focus on both the young patient who expresses neither desire nor need, nor satisfaction and his family. What to do when caring for the patient might disrupt the care of the family? Moreover, does taking into consideration the family's word guarantee the respect for the patient? Facing this clinical situation where uncertainty prevails, the ethical approach, genuine area of authorization of thought, can give meaning to the practices and facilitate making the least bad decision possible. In this article, first the ethical dilemma is identified (to perform, or not, a gastrostomy), then the clinical situation of the young patient is analysed by a dual approach: classic technical – medical, ethical, legally and innovative – ethical principles by convening autonomy, beneficence, non-maleficence and justice.